Karnataka HC Orders Centre's Intervention In Treatment Of 17-Month-Old Baby Suffering From Rare Disease
Spinal Muscular Atrophy (SMA) is an inherited disease that affects nerves and muscles, causing muscles to become increasingly weak. It mostly affects infants and children
Hyderabad: Known for its debilitating condition, a 17-month-old baby is suffering from a rare Spinal Muscular atrophy (Type 1) disease. The disease doesn't have a vaccine available in India, so they need to import it from the United States. And it would cost the parents of the baby around Rs 16 crore.
Spinal Muscular Atrophy (SMA) is an inherited disease that affects nerves and muscles, causing muscles to become increasingly weak. It mostly affects infants and children.
In view to save the baby, the Karnataka High Court has issued a notice to the Centre in connection with the medical treatment of the baby suffering from this rare disease. The petition in this regard was submitted by the baby's father Naveen. The bench headed by Justice Krishna S Dixit heard the matter on Monday.
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The petitioner's counsel submitted that the baby suffered from an inherited disease. The treatment is not available in India and the vaccine has to be imported from the US, he said.
It was also submitted that the cost for the treatment is Rs 16 crore and till now Rs 8 crore has been collected through crowdfunding. The baby should be treated before 24 months from birth otherwise it can be fatal. The petitioner requested to give directions to the government to provide a deficit amount for the treatment.
The counsel for the Centre explained that there is a separate policy for the treatment of rarest of rare diseases and medical experts have to take a call on it.
The bench after hearing submissions said since it is a question of the life of the baby, the Central government should make its stand clear on the matter as early as possible and adjourned the matter to October 1. The court also issued notice to the Central government in this regard.
(With inputs from IANS)
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